Parents freeze their disabled daughter in time.

Dizzy

Sit! Good dog.
Joined
Sep 14, 2005
Messages
17,761
Likes
1
Points
38
Location
Wales
#1
This is a very thought provoking story.

www.independent.co.uk/news/world/am...on_types=news.reads&fb_source=other_multiline

Opinion was divided yesterday about the case of Ashley X, the nine-year- old girl whom doctors have determined will never grow up. The severely disabled child has had her womb and breasts removed and hormone treatment to halt puberty and stunt her growth, freezing her development so that her parents can continue to lift and care for her at home.
 

puppydog

Tru evil has no pantyline
Joined
Nov 27, 2006
Messages
7,500
Likes
0
Points
0
#2
Honestly, I don't see anything wrong with it. The child is catatonic. It makes no difference to her at all yet it makes the world of difference to her parents.
 

ACooper

Moderator
Joined
Jan 7, 2007
Messages
27,772
Likes
1
Points
38
Location
IN
#4
This quote from the story sums it up for me:
Unless you are living the experience, you are speculating and you have no clue what it is like to be the bedridden child or their care givers.
I honestly haven't a clue what I would do in that situation, and I sure don't want to speculate about what THEY should/shouldn't do. As a parent myself, I am sure they agonized over the decision for a long time before reaching it. My heart goes out to them.
 

Dizzy

Sit! Good dog.
Joined
Sep 14, 2005
Messages
17,761
Likes
1
Points
38
Location
Wales
#5
I am totally on the fence with it... But some part of me wonders how sure they were of her outcomes if she was so young at the time... I wonder what SHE would have wanted? I wonder if she had an advocate?
 

Fran101

Resident fainting goat
Joined
Oct 12, 2008
Messages
12,546
Likes
0
Points
36
Location
Boston
#6
I sure would like to say "Oh well if it was ME" but frankly, I have no legs to stand on when it comes to this story
1. I am not a parent
and
2. I have no experience caring for anyone with that kind of disability

that said, all the information provided is from the parent's blog so really, we have NO idea what really is going on/what doctors had been contacted/treatment/diagnosis.

It does make sense for both the parents and Ashely X, if you look from a distance. Ashley gets to go more places, move around more, is more easily cared for by her parents vastly improving her quality of life.. and her parents are able to care for her much more easily.

it's when you get closer..and really think about it. that this story hits a nerve... How do we know how Ashley X feels about this? Would she have done things differently? Is her brain TRULY static at the point of being a baby..or perhaps is there something deeper going on?

When does somebody disabled loose the right to make things kind of decisions for themselves? where's the line?
Is it when somebody can't talk? move? Is that what makes us people and give us the right to decide what is done medically to us?

How much medically can be done to disabled people in the name of their care-takers before it goes from improvement quality of life to simply..cruel convenience?
 

ACooper

Moderator
Joined
Jan 7, 2007
Messages
27,772
Likes
1
Points
38
Location
IN
#7
I wonder if she had an advocate?
I wondered that as well........or at least someone to speak objectively.

Man, I said it earlier but will repeat, I'm sure her parents agonized over this decision long and hard :(
 

Baxter'smybaby

swimming upstream
Joined
Jan 17, 2007
Messages
21,977
Likes
0
Points
36
Location
NY
#8
I am abstaining from a full commentary here--but just want to say I can see medical reasons for making such a decision--watching my daughter struggle with various stuff, and not being able to understand it, or even understand why she has pain, etc.--hard to watch and hard to know what to do to help. It all gets very complicated.
 

smkie

pointer/labrador/terrier
Joined
Dec 16, 2004
Messages
55,184
Likes
35
Points
48
#10
I am abstaining from a full commentary here--but just want to say I can see medical reasons for making such a decision--watching my daughter struggle with various stuff, and not being able to understand it, or even understand why she has pain, etc.--hard to watch and hard to know what to do to help. It all gets very complicated.
agreed.
 

puppydog

Tru evil has no pantyline
Joined
Nov 27, 2006
Messages
7,500
Likes
0
Points
0
#11
Something just popped into my head. Its bad enough having to deal with the day to day care of an immobile person but now having to deal with a montly menstrual cycle? No way!
 
Joined
Feb 26, 2011
Messages
6,405
Likes
0
Points
36
Location
Minnesota
#12
Just because something happened to also be convenient for the parents, it doesn't mean they did it solely FOR the convenience.

I can't even imagine being in their position, how heartbreaking and agonizing. Personally I think if they were acting purely out of selfish motives/for their own convenience, they'd just stick her in a care facility and be done with her. As it is, they're making an effort to keep her with them and be able to do as many things as possible with her. I just can't see how that's a bad thing.
 
Joined
Dec 20, 2003
Messages
94,266
Likes
3
Points
36
Location
Where the selas blooms
#14
I am abstaining from a full commentary here--but just want to say I can see medical reasons for making such a decision--watching my daughter struggle with various stuff, and not being able to understand it, or even understand why she has pain, etc.--hard to watch and hard to know what to do to help. It all gets very complicated.
If anyone can truly comment on this it's Bax.

I've seen various friends struggle through this with their children, male and female. I don't know what is going to happen when they can no longer care for their children.
 

smkie

pointer/labrador/terrier
Joined
Dec 16, 2004
Messages
55,184
Likes
35
Points
48
#15
I took care of women who were very much in the same situation as this child. THey were people that had no family to care for them and were in a nursing home type situation. There isn't a lot of love and understanding for the discomforts of a menstrual cycle and there is risk as well of abuse and pregnancy. I wouldn't ever want to be in such a place to have to make such a decision, but I sure would never try to judge anyone who is. They are being there for her in her physical care, which I am sure is over the top overwhelming and maybe concerned about her welfare if she becomes more than they can physically handle.
 

Lilavati

Arbitrary and Capricious
Joined
Sep 3, 2007
Messages
7,644
Likes
0
Points
36
Age
47
Location
Alexandria, VA
#16
I can't even imagine being in their position, how heartbreaking and agonizing. Personally I think if they were acting purely out of selfish motives/for their own convenience, they'd just stick her in a care facility and be done with her. As it is, they're making an effort to keep her with them and be able to do as many things as possible with her. I just can't see how that's a bad thing.
This.

When I read about this story and the controversy it engendered, the primary accusation against the parents was that they were stripping the child of her human dignity for their own convenience.

Whereas, if convenience were their concern, they wouldn't be spending their lives caring for this child and worrying about who will care for her when they are unable to. They'd just dump her in the cheapest care home they could find and be done with it. If this is what it takes to keep her in their home, under their care, for as long as possible, then it strikes me that this is the best thing for her.

Living in her parents home, with those who care for her, is far more important to her dignity than full growth and sexual maturity. The alternative is that she will end up being treated like furniture much sooner when there is no choice but to place her in a home.
 

Members online

No members online now.
Top